Amelia is a beautiful ten year old who has been diagnosed with Ataxia Telangiectasia.

Monday, 10 December 2012

Two years and our "Happy Place".

Today is the day that marks two years since we first heard the words " Ataxia Telangiectasia".

The exact day that we were told to "go home and cherish every moment with your daughter".
"She is NOT dying" they argued but "she will be lucky to survive to 20 years of age".

I will never forget that day.
The entire week living at our Royal Childrens Hospital was horrific enough, but that day is part of me now.......forever.

Scott HAD to come in for a formal meeting.

They had found something in all of Amelia's traumatic tests.

I was able to get some information before the meeting..........
"It is not treatable and there is no cure".

That day was the most horrible day that I will ever encounter.

Many, many of you on here were with me......with us.
Not only in spirit but also online.......waiting.
Waiting to hear why part of her brain was missing.
Why she was deteriorating.

How I drove Amelia home safely that day, I will never know.
How I was able to see through the tears while driving still confuses me.

That is a turning point in our lives.

Not a small one.
A VERY big one.

In the past two years so much has happened.
So very, very much.

Through these "blogs" you have travelled this journey of sadness, devastation, happiness and enlightenment (and not in a religious sense).
You have all celebrated Amelia's achievements and helplessness.
You have witnessed her intelligence and profound statements.

2 years.

Two years of learning that everything can change in a minute.

A normal life can suddenly become one that is sacred.

Amelia has gone from someone that walked out of the hospital that day.........to someone who can no longer walk "one step" without full support.
Two years ago she was walking (and running) around with AFO's (plastic leg supports) on her lower legs.
Now she needs a wheelchair.....constantly.

Two people are needed to shower Amelia, one to toilet her and one to assist her do anything else.

We featured in a newspaper, magazine and on television.

Amelia's Project was established and gala nights and numerous fundraising events eventuated from this.

Many of you have told me stories about how Amelia has changed your lives.
The photo's, the laminated drawings, the positive quotes.
Items that you have kept to remind you that everyone is entitled to an "amazing life".
Your own realisation that life can change....or end, quickly.

We travelled to Disneyland in America and were able to convert a van, suitable for an electric wheelchair to drive into.
The bank account also leaves us enough money to pay for therapists for at least another two years.

We are very lucky.
But we are also not...........

Recently we embarked on a new journey.

"No regrets at the end" will be the name of my novel.
Many of these "blogs" will be part of my motivational speech.

A few months ago it was time for a new pathway.
Amelia will always have Ataxia Telangiectasia, but our whole family needed to approach our lives differently.

Amelia deserves an "amazing life"....but so do Scott, Tom and I.

Negative was replaced with positive.

Many things I am unable to mention here but there is also some things I can.....

Scott has lost 24 kg.
I have lost 14 kg.
Amelia is now at Special School full time.
Everything has fallen into place for 6 year old Tom.
Tom is mature beyond his years, extremely clever (yes. I am biased) and very tolerant with Amelia's extra needs.
Amelia has become confident, demanding and opinionated. She argues with me and gives me a list of demands constantly.
I LOVE IT!!
Scott and I are a lot more energetic, positive ........... and happy.

I can genuinely say that we are all the happiest we have been in a very long time.

As someone said to us recently "You are in a really, realy happy place right now".

Today as I drove to my first work day at endota day spa head office, I had tears in my eyes.
They were tears created by nerves.
I then experienced the most wonderful, positive and powerful day.
On the way home I had genuine tears....of happiness.

Many of you will be shocked to know that I actually wore "fashionable" clothes!
A black, knee high dress.
Knee high black boots.
A slim fitting black jacket to the waist and......
a silk scarf around my neck.
Yes friends, I went all out !!!
(maybe make up next time!).
This suburban chick drove 1 hour into the city, had to actually find the suburb of Hawthorn and eagerly worked 4 hours.

Later in the day I recieved the comment that I was "extremely enthusiastic".
Personally I know that I had verbal diarrhea.
I was very, very nervous and excited !!!
But I will accept extremely enthusiastic !

I answered phones, handled emails, printed gift voucher emails, studied the products and began researching my future endeavor....the child care centre.
After a very informative talk with the endota "legal" representative, I feel extremely confident to begin the many pages of paperwork to ensure this happens quickly.

When I returned to my "home environment" the enthusiasm from Amelia and Tom was just as enjoyable.
"How was work mum?" , "What did you do mum?" , "Was it fun mum?".

And as I finish this very looooong entry, I would like to tell you about Amelia's new wish.

Her favorite movie is "A Dolphin Tale".
It is a true story about a dolphin in America that is found in the sea with a fishing net wrapped aroung it's tail.
The dolphin conservation centre in Florida "rescue" it and regrettably have to remove the dolphin's tail to save it's life.
They named it Winter.
The pressure on it's spine, with no tail to swim, means that it is doing irreparable damage to Winter's spine.
A doctor fitting prosthetic limbs to army soldiers, makes a prosthetic tail for Winter (after many attempts).

Winter has her own website, webcam and long line of disabled people coming to meet her.

Amelia WANTS to meet her.

So welcome to my new goal for Amelia.
In 2014, I aim to get Amelia to Florida to meet Winter the dolphin.
We will most likely contact "Make a Wish" about this.

Tom on the other hand was very disgruntled that Amelia gets to "Make a Wish" and he does not.

Hoping for a happy ending I said to Tom "Ok. What is your wish and I will try to make it come true".

Excitedly he rubbed his hands together and said "To one day drink as much Pepsi Max and Powerade as I like".

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Amelia's Project Links

About Me

Amelia is a beautiful eight year old who has recently been diagnosed with Ataxia Telangiectasia. Amelia's Project began on Facebook after Amelia was diagnosed in December 2010. My name is Amanda and I am Amelia's mum. Down this side of the page you will see "blog archives". This covers our journey from the start of Amelia's A-T diagnosis. I would like to share our journey.
Please email us at ameliasproject@yahoo.com.au